How does a day in the life of a fibromyalgia sufferer look like?

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fibrome

Edited on 10/21/2022 at 2:34 PM

Good advisor

Hey everybody,

I have come to realize that the vast majority of people don’t know what

fibromyalgia is, never mind understanding our situation. Every time I speak to

somebody new and inform them of my condition, it seems that they do not know

what we go through on a daily basis. The pain, the tiredness, difficulty

recalling things- its just so tiring! I would like to know what a normal day

looks life for my fellow fibromyalgia brethrn. At least this way I can get

some inspiration and know that I am not alone in facing this.

Thank you

All comments

Rahul.R

Community manager

10/21/2022 at 2:53 PM

Hello,

How are you feeling today? Thank you for opening this discussion. It is difficult to judge how much pain a person may be in because sometimes the pain cannot be seen. I shall tag a few members to get the conversation started -

@Honney @Ridleyz224 @Rynblu @TheDisabledDiva @Grammaof3 @EhulaniLily @Sheresa @lilbit73 @JessPotato @toomuchpain @CharlieE @Coco317 @pinsnneedles @SabinaYetta52 @rainbowgerl @curtaincall @fibrome @Edythe @Blueboy @dingalingas @Cdionne1089 @Vickijustvicki @tlester451 @jae_camille @spark0206 @MrKrabs @ChristinaB82 @Troyswife @live71 @zoiesmom53

How does a day in your life look like? What do you like and not like about your present schedule? Is there anything you would like to say to people to make them understand about your condition?

It would be great to hear your thoughts!

Wishing you a great day,
Rahul from the Carenity team

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Rahul Roy

How does a day in the life of a fibromyalgia sufferer look like? https://www.carenity.us/forum/fibromyalgia/living-with-fibromyalgia/how-does-a-day-in-the-life-of-a-fibromyalgia-s-5002 2022-10-21 14:53:28

LizziB

Community manager

10/23/2022 at 4:53 PM

Good advisor

Hi @fibrome

You are not alone! Here are some of our health magazine interviews of other fibromyalgia suffers. Feel free to share these links with others to help them understand more about what it's like to live with this disease.

Faced with fibromyalgia, relatives should be understanding and not judgmental.

My battle with Fibromyalgia: an eternal struggle between hope and depression

Fibromyalgia: Widespread, burning pain throughout the body

Fibromyalgia: "Sometimes it hurts so much that it feels like my bones are broken!"

Take care,

Lizzi

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LizziB

HelenDz

04/18/2023 at 11:57 AM

Hi you! I've just seen your post, and thought I'd reply.

A normal day! Usually feels like I've been at the gym for 24hrs or ran 2 marathons back to back - well, that's what my muscles are telling me, anyway! And on waking up, I have to stretch carefully just to see what muscles hurt more, so I know that when I stand up and start to walk, I can actually walk without the aid of sticks just to get to the bathroom.

Getting dressed - is today a skin sensitive day? Can I manage bra or a vest? Is it pj's or loose clothes? Or if its really sensitive, just a chemise and silk dressing gown.

Showing gets done when my husband is here, when he can help. a) so I don't get tired (b) so I'm safe - I don't spasm and fall. He dries me, has a towel ready on the bed and pillow, and I lay there for a while to rest and have a coffee before drying hair.

Thankfully all of my meds come in little pouches, so I don't have to remember what I need to take, it's all done for me. Tear off pouch, take meds, all done. And I can't forget that, because the alexa show in the kitchen has a screen that tells me I have to take them! My husband has put it in the calendar each day so it comes up on there so I don't forget. Alexa is my best friend. I tell her everything. Remind me to get the chicken out of the freezer. Add soap to shopping list. Set timer for 30 minutes. Because brain fog is real. There are days when I get to 3pm and I look down and realise I'm dressed, and think I don't remember doing that!

Thankfully my husband works shifts, so it's only 2 days a week that I'm on my own through the day, and I have to wait until 6.30 to feel sane, for someone to tell me I'm not going mad, I didn't forget, who understands when my words are lost and I have to use 6 sentences to get 1 word, who can tell me why I went into that room without making me feel like an idiot, but who will laugh with me when I need him to.

Now for the spasms, the bane of my life. The reason I feel like I've been at the gym all night. From the neck to the ankles, my muscles spasm, and its hell. I've given my husband black eyes, fat lips, I've put my back out more times than I can count, I live with permanent whiplash; they just don't stop. If I'm in a flare (I've been in one now for several months) they go on all day and night) and all I want to do is cry, for the pain, for the hell to stop, for the ability to live a semi normal life. Try having your arm spasming with a spoon of soup half way to your mouth and wearing it.... it's not funny! ( well, it was bloody hilarious after the event, but during it, no! )

So a day in the life of a fibro sufferer/warrior - there you have it. Its lousy. More often than not, I feel like life is passing me by, like I'm stuck in a pain loop. I used to use humour all of the time to get through fibro, get past its symptoms, but this flare has just gone on for too long and has been too hard.